Wednesday, February 3, 2016

Special, too

     My drug holiday is about to end with a brand spanking new potion from the vault. We should've picked it up yesterday at the hospital instead of coming home, but I'm glad we didn't.
     That's how weird I am.
     I was more than happy to have it filled at the pharmacy near my house, even though I knew it would take longer that way.
     Now, it's more complicated because they don't have it here, period. Another day or two or three could pass, depending on how much I want to drag my feet on this.
     The two pharmacies are figuring it out now. I told them no worries.
     This holiday is starting to grow on me.
     I showed the epileptologist my seizure video, the one where I walk into the kitchen and my son, Tommy, catches me. I wanted him to see how goofy I act it makes me feel.
     He watched the passing out part several times and said he'd never seen anything like it.
     That's how weird I am.

     On the elevator ride up, a little girl wanted to push the buttons for everyone. She was in first grade and showed off her math skills, shyly, as we ascended.
     A man in uniform with her (Dad? Doctor?) made sure she said goodbye to the third floor man and fifth floor lady when they reached their destinations.
     Then, it was just us three, heading to the top.
     She didn't look sick, not at all. I checked with quick glances, then gave her my best smile when she caught me.
     "We're going to the same place," I said, stepping through the door.
     "She must be special, too," the man told her.
     "Oh, I am," I said, over my shoulder, like it's the best thing in the world to be, special.
     He said something to her about a test, and they turned in another direction.
     I hope it really was another direction, that she isn't special, and her test comes out normal, right on the bell curve.
     But if she is...special...I hope she can keep her weirdness from leaking out for at least the next  12 years, maybe a little longer, like I did.

Saturday, January 30, 2016


     I'm postictal, which means I just had another seizure...minutes ago.
     It wasn't anything to write home about, not like the one yesterday that caused me to lean my head back and smile into the sunshine like Stevie Wonder in the middle of a tune.
     This was my typical "zone-out" where I stared into space for two minutes.
     I even managed to hide it from Jessie, my neighbor's dog, who knows my habits well. She had her eyes on me the whole time.
     As I stared back, while coming out of my seizure, I thought to myself, "Maggie would know something was up." (Maggie's my dog, btw.)
     She would be close to me, touching me by now...her little body pressed right against me.
     That's what I was thinking while I gazed at Jessie. Sometimes I find Maggie in my seizure videos when I look at them later, not even realizing how close she was when filming.
My little photo-bomber
     Maggie licks my face when my head is on the ground, I thought. She wakes me up.
     The seizure began when my mind wandered into the danger zone of first grade. Nothing bad happened there; it isn't like that.
     I know this because I feel so good when I come back again, like I've been to Sesame Street.
     I walked around a little bit, too, I must confess, but only five or seven steps before sitting down.
   While walking, I reminded myself why I had to go sit in the open, why I couldn't zone out in the corner and enjoy the moment.
      "I'm doing this for us," I told myself, "So I can find out how much control we have when our minds are being pulled somewhere else, by our brains."
     That still makes sense to me now, but it's hard to explain while postictal, so I'm going to skip it.
     While returning to here, as I looked into Jessie's eyes, I thought, "If I can fake her out, I'm getting pretty good at this."
     It's harder to fool dogs than people, for some reason.
     I gave her my best smile...not the Wonderful one from yesterday's deeper seizure but the conscious smile I give everyone.
     I was back.
     She turned to go inside, and I got up to do the same. Over her shoulder, before walking into her house, she barked.
     Maybe Jessie is onto me after all.

Shocking, isn't it?

     I would undergo electroshock therapy if it could help control my seizures without medication. The idea comes from a book about a news anchor who suddenly went blank on the air. She was diagnosed with depression or bipolar, I can't remember which.
     Electroshock therapy forced her brain to have seizures and she slept for days. Then, her sudden illness went away, and she went back to her life.
     The way she explained it, her doctors were uncertain whether the seizures cured her or if it was the deeper states of sleep that followed. Maybe it was a combination of the two.
     Either way, it sounded much better than if she had spent the rest of her life on different medicine, talking to therapists about her state of mind, even if she had to go back again, for a tune-up.
     Except for the convulsions, it could almost be like a holiday or spa treatment.
     It's not an option for me anyway. One convulsive seizure could be the spark that brings more, and then, everything would change.
    My disease wouldn't be so much fun any more.
    It might even be a little bit scary.

Friday, January 29, 2016

Up in the Clouds

     It's 2002. I just went up in a hot air balloon, one of my childhood dreams come true. My husband is with me. I think we drank champagne up there, but I can't quite remember for sure.
     If so, it must've felt naughty, even at that age, because my parents were babysitting the boys. I probably felt a little bit like a college kid again, mints tucked away in my purse for the drive home.
     My chemical seatbelt was working great that day; I didn't get faint or dizzy on the way up. There was no feeling of panic, simply elation and awe at the sudden feeling of floating above the world.
     It was nothing like the time I flew in a private plane in college, another childhood dream come true. That was when I had seizures but still called them "spells."
     I started to feel sick almost immediately in that airplane; it had something to do with the sudden change in air pressure and noise, I think.
     We only flew to Chapel Hill and back, which is a short trip from my hometown, even by car. But I started to feel sick almost immediately and had to "fake it/hold it in" so I wouldn't freak out my boyfriend and his friend, the pilot.
     If they had realized how sick I felt, it would have alarmed them too much. My instincts told me that would make things worse, that it was better to wait it my head. Nowadays, I would take deep breaths.
    At the time, I wasn't sure if I was going to faint or throw-up or both, but my impulse was to get safely on the ground where I could lie down...on the ground, literally. I don't remember it feeling the same as a "spell" because it was scarier and more "out of control in a bad direction."
     It may have been a panic attack, now that I look back on it. Whatever it was, I knew the best thing for me was to "keep my head together and get home."
     I did it, too, without any chemical seat-belt to guide me at all, prescription or otherwise. There was no champagne nor anything else on my breath that afternoon.
     I'm sure I prayed and probably recited Psalms and Shakespeare in my mind because I have it memorized so well, and that's what I do sometimes. It's a  mix tape that plays over and scripting.
     I managed to tell my boyfriend and his friend, the pilot, that I felt bad. I probably said I was about to pass out or get sick to my stomach.
     Once they looked at me, they knew it was time to turn back, so we did. It was  was a short trip, and I don't remember much of it.
     I was buckled in, literally, the entire time, so it wasn't dangerous for me at any point. It only felt dangerous inside my head, and once I realized that, I was okay.
     I no longer felt sick to my stomach, and neither did I have the urge to lie down on the pavement at the airport the moment our wheels touched ground.
     Instead, I could take the time to unbuckle and walk over to the grass.
     I didn't fall along the way.
     I was back,

Tuesday, January 26, 2016

The best Coach

     "All behavior is learned," she said.
     Inside, I cringed.
     Outside, I didn't say anything. It hurt...a lot..but I held it in.

     "Who taught me to have seizures?" I wanted to ask.
     "Who taught me to drive into a house?" I wanted to ask.
     "Who taught me to DO THIS THING THAT I CAN'T CONTROL?!!" I wanted to scream, but I didn't. I held it in.
       (Most of them didn't know about this thing, btw.)
      I put on my mask and pretended to agree with her.
      She wasn't hitting all the right notes, but I liked her tune, and so did the children. They danced to it, the way they were supposed to, usually.

     "We're all here for a paycheck," she continued, "It's the same with our students. Give them something to work for!"
     "But I'm not here for a paycheck," I said to myself.
     If that had come out of my mouth, I would've fit in even less than I already did.
     They weren't there for the paychecks, either, not really.
     They cared too much about "getting it right" to only be there for the paychecks. It didn't make sense, that part of her argument.
     They cared about the children, especially my little misfits. I could tell.
     Why else would they listen to someone half their age telling them how to do their jobs better?
     They listened so closely to her because they wanted to understand our secret ways of getting the children to behave themselves in class. They saw it working for us and wanted to learn how to do it, too.
     Coach was there to show them the way, and this reporter kept her mouth shut so she could.

Monday, January 25, 2016

Take your pill

At first,
I thought he had a speech impediment,
but I was wrong.
He didn't have anything,
not really,
except a label.
It helped him fit in,
caught him up,
they said.
But it made him stand out,
He wanted to stay in,
all the time.
He did fit in,
almost all the time.

When someone said,
"Isn't it time to take your pill?"
he didn't fit in.
If it really was time, he left,
and went to the nurse.
If it was a rhetorical question,
he didn't say anything
at all.

It was an accent,
not an impediment,
that faded away
along with his label
years before
he walked that stage
before my smiling


Don't hang up our jackets.
 pick up our pencils,
 tie our shoelaces,
 wipe our faces. or
 pull up our pants.
Say, "Good Job!"
after we
do it for ourselves.
Don't grab,
 chase or
Catch us being good.
It happens all the time...
just look up
and notice!
Smile at us,
for not stimming or scripting or whatever it is we do
that makes you so uncomfortable.
It works.
You don't hafta believe me
to try it.
Instead of noticing
every little squeak
and flap,
You could notice
every little pause
in the action.
Try it,
for a class or two
and see what happens.
Maybe you, too, can do magic,
like me.